Referral rates and decisional conflict

Are cancer patients routinely referred to fertility preservation specialists? Are patients who are referred for fertility preservation discussion less likely to suffer decisional conflict?

With expanding awareness of fertility preservation for patients with cancer, the rate of referral of cancer patients to fertility services is increasing. In one study of breast cancer patients under the age of 45, the referral rate went from zero to 95% over a ten year period.^[1] Other studies have also observed an increase in referral rates.^[2][3]

However, rates of referral are highly variable across centres, tumour types, ages of patients and clinicians type.^[3] In a German study, only one in three patients under the age of 45 who spoke with their oncologist about fertility also spoke with a fertility specialist about their concerns.^[4] Only 20% of women diagnosed with cancer who were eligible for a fertility preservation consultation at a North Carolina institution were referred.^[5] In a similar study, only 29% of reproductive-aged male patients with cancer received fertility counselling.^[6] Rates were even lower in other studies; 9.8% of patients referred for fertility preservation counselling,^[7] 13% of patients referred to a fertility specialist,^[8] and 26% of female patients with cancer consulted a fertility specialist.^[9] Most of the studies mentioned above are small (100 to 300 patients) and many only involved one institution. Despite this risk of bias, it is clear that patients are missing out on being referred to fertility preservation services.

Most studies have shown that younger age increases the likelihood of referral to a fertility preservation specialist.^[5][6][8] In one study of young cancer patients 15 to 24 years of age at diagnosis, 59% were offered a referral to a fertility specialist.^[10] Parity also influenced the rate of referral, with the rate being higher for nulliparous patients,^[5] and lower for those who already had children.^[8]

A patient’s desire to participate in healthcare decision making is variable, being influenced by age, education level, health status, physical, functional, psychological, financial and social factors (Kelly-Powell 1997). Participation in healthcare decision making can also be influenced by insufficient knowledge about available options including associated harms and benefits, and sub-optimal decision-making assistance (O’Connor 1998).

The ease with which a cancer patient makes decisions about their care is reflected in the experience of decisional conflict, found to be associated with decision delay and regret, treatment withdrawal and anxiety (Knops 2013). Cancer care related decisions can be difficult for patients due to issues that arise in communicating complex information about options for treatment and management. Cancer patients face an initial, and often perceived life-threatening, diagnosis and thereafter face complex and often fluid decisions about care options, which can interact with personal social and financial challenges.

There is very little evidence informing the association between fertility specialist referral and reductions in cancer patient decisional conflict. Of the limited number of studies available, most are case series or relatively small cross-sectional investigations. Other problems in the literature available on this topic include the inability to generalise the results to different populations and the high potential for selection bias.

A couple of studies have suggested that referral can reduce decisional conflict. In a study of 52 cancer patients who attended an in vitro fertilisation (IVF) clinic, decisional conflict was lower in patients who were able to ask questions during the consultation and higher for women who reported that cost influenced the treatment decision.^[11] Late referral (two weeks from diagnosis) also increased decisional conflict for women.^[12]

Referral may also influence the uptake of fertility preservation treatments for cancer patients. In one study all 23 males who banked sperm had received fertility counselling.^[6] In another paper adolescents referred to a fertility specialist were almost five times more likely to successfully bank sperm.^[13] Women referred for fertility preservation before cancer treatment were also more likely to proceed with treatment for fertility preservation.^[1]

One considerable challenge in substantiating the impact of referral to a fertility specialist is that it is only one of the influencing factors investigated. The wide range of factors that influence decision making by cancer patients, makes the independent influence of referral to a fertility specialist particularly difficult to determine. The impact of referral to a fertility specialist in reducing decisional conflict is likely to vary among patients given the potential range of personal, practical and social factors influencing individual decisions.

For paediatric patients, multidisciplinary teams are recommended including paediatric oncofertility CNCs, gynaecologists, endocrinologists, oncologists surgeons, ethicists, in collaborative partnership with reproductive clinicians and scientists. Counselling can be implemented in stepped-care models depending on complexity of the case, clinician expertise and organisational protocols.^[14][15][16]